What shoul I do or not do

[Dansie]

I am new here had 2 brain bleeds 13 weeks ago not sure what I should or not do as have had no further treatments from either hospital or GP

[cat3]

Hi Dansie and welcome. I was discharged at 12 weeks but with a a forthcoming review for 3 months hence. After the review I was discharged into the care of my GP with the assurance of follow up MRIs.

It seems odd (& harsh) that you've had no follow up support whatsoever. Are you in the UK ?

The usual main after-effects are fatigue, memory issues, poor balance, emotional instability and intolerance to excess stimulus.

I suggest you phone the Headway helpline (freephone 0808 800 2244 during office hours) for further support and guidance.

Meantime, don't push yourself beyond present limitations ; take regular rests & light exercise (short walks or whatever works for you) eat healthily, avoid alcohol and drink water regularly throughout the day.

All best wishes, Cat....

[Dansie in reply to cat3]

Thank you for your input I had a bleed on both side of my brain and operated on both sides but was only in hospital in The Neuro dept at John Radcliffe Oxford for 6 days then discharged with no info whatsoever ,have made a good recovery apart from a bit of memory loss from time to time ,have after 8 weeks seen my Gp who says there’s nothing they can do as I seem perfectly fine and has agreed that I can start driving again , but was glad of your input and am not overdoing things but worry that It might happen again as it was so random xBarbara

[cat3 in reply to Dansie]

Please talk with Headway staff Barbara. Most GPs are clueless on brain injury and advice from those GPs shouldn't be trusted.

I saw my GP about sudden loss of taste & smell and she laughed when I told her my friend lost her taste & smell prior to a bleed on the brain. I had a SAH a couple of weeks afterwards. My consultant later stated how olfactory disturbance is a common indicator.

You need a referral to a neuro dept. before trusting yourself to drive, and for expert advice and reassurance on moving forward.

Do speak with Headway m'love and let us know how you get on. x

[twice]

Hi, it's incredibly frustrating to read your post because I was also discharged from the hospital after a short period following my traumatic brain injury which included a subarachnoid haemorrhage and I was also given no advice whatsoever from hospital or gp and Like cat says please phone the headway helpline tomorrow and speak to them about things because you most definitely need support with this, it makes me so sad when I hear that people are still being treated like this and I am also incredibly shocked that your gp has said it's ok to drive because you seem okay. Please ask the helpline for advice about being told you can drive so soon, every brain injury is different but I am not allowed to drive again.

[Dansie]

Thank you for your comments x

[moo196]

Morning, really briefly, you need to be insisting to see the community neurology rehab team.Sorry for the brevity... I have to get to work.

[Cornishboxer2]

Hi Dansie. I’m sorry to hear about your brain bleeds. cat3 is absolutely right about getting advice from Headway and definitely push for Neuro rehab care. Like you I thought I was ok after a few weeks and I did drive with backing from the doctor so I could continue trying to work. Looking back with the benefit of hindsight I now realise pushing myself to attempt to carry on working wasn’t the best idea as I had a very physical job. Again my doctor supported me possibly because I present as very positive and persuasive. Think about all these things for yourself and get advice from Headway. It took me well over a year to get Neuro rehab which was probably a bit late. I no longer drive and tests revealed I have definitely got memory issues as well as nausea, migraine and dizziness. Please take time to look after yourself with lots of rest and don’t overload with bright light, noisy environments, screen time and the like. Wishing you a good recovery.

[Dansie in reply to Cornishboxer2]

Thank you for your positive feedback x

[Painting-girl]

Sorry to hear this Dansie, all really good solid advice above - definitely get support from Headway and neurology team, and be wary of driving - it's your responsibility to ensure you are ok to drive at the point you get behind the wheel - the paperwork from the DVLA when I was allowed to drive made that very clear, so on days when my fatigue is noticeable, I don't drive.

Are you on your own, or do you live with family?

One thing to try to be aware of is, that we tend to lack self awareness early on, which can delay us in seeking help. A useful book I was recommended on here by some kind person (and don't be put off by the title, it's not a mindfulness book as such - it is more about coping with brain injury, and has a large really useful section by Caroline Vaughan a neuropsychologist.) It's by Jody Mardula and Caroline Vaughan and is called 'Mindfulness and Stroke - living with brain injury

Keep us posted on how you get on 🌸

[Pairofboots]

Hi Barbara. Sadly I welcome you to this unique club. I agree about having a chat with Headway. Their contact details are pinned to this page. They are apparently a little difficult to get hold of at the moment, but well worth it.

I'm not sure about driving, it is best to talk firstly with Headway, and the consultant you were under at the hospital before driving, then talk to your insurance. I'd always suggest Headway first because they can prepare you with the correct information that you need to tell others.

Again ask Headway regarding the need to inform DVLA. Don't speak to DVLA without being clear on the legal requirements, as they may unnecessarily pull your license, pending medical reports. But this is one area you really need the facts. There isn't always a requirement to inform DVLA, but you don't want to inadvertently fall fowl of the law.

I am surprised that the hospital didn't refer you to the neuro-rehab team, the GP should do this in the absence of the hospital's referral. You may not need any assistance at the moment, and hopefully will not need any, but you may find that there is cause later on.

Lastly welcome again. This forum has a wealth of experience. But you should check any direct advice with the appropriate professions, as what is right for one, may not be right for you. It is a good sounding board if you do have any ideas niggling you, or you don't know where to start to find out something. You will hear 'early days' and call Headway a lot, the first is always true, and the second is just sensible. 🍀

[Dansie in reply to Pairofboots]

great advice thank you

[cyclinghu]

Hello Dansie - thank you so much for your post. I agree what others have said re fatigue, memory issues and also in my case depression. I was in hospital for 3 weeks although I did not have surgery - my consultant made that decision due to my confusion although I still think it was due to my reaction to the anti convulsion medication - keppra. I started driving about 2 months after discharge - my OT reported me to my GP who insisted I report my condition to the DVLA - I did and they immediately revoked my licence for 6 months - actually took more than 8 months until it was returned and that was with a letter from my GP informing them that in his opinion I was fit to drive. Even though my licence was returned they have deleted my HGV 1 and PSV which apparently is normal - I can reapply after 2 years. By law you should notify DVLA after head injury but if you do your licence will be revoked for a minimum of six months and it could be a lot more.

[Dansie]

Hi yes I did tell theDVLA that I had had a bleed on the brain I also spoke to them after 3months and was told the onus was on me and if my gp was happy with my progress it was ok to start driving , I have confirmation from gp in writing just in case , but it’s so frustrating that no one seems to be able to tell you the right thing from your discharge from hospital ,I have been very lucky that I have no side effects apart from the odd thing I can’t remember ,but that could be my age as well 75 ,

[Painting-girl in reply to Dansie]

Hello Dansie, I'm a bit worried that one of the reasons that you weren't offered follow up neurology care, might be because you are older ? So it might be helpful to push for a neurologist referral now. The other thing is that early on after a brain injury, we tend to lack self awareness, so don't really twig what's changed. And we pretty much all look ok after a brain injury, which is another reason why we don't get a great deal of support. But if it saves you reapplying for your licence that is something - I also spoke to my insurers, and they said that if I had the all clear from the DVLA then they were also ok - but perhaps worth checking with yours. I didn't relinquish my licence but just stopped driving, and then filled out their forms, which they sent onto my consultant to complete. After a few months, the DVLA wrote back to say that I could drive.